A General Introductionto Bleeding Disorders

We want people affected by bleedingdisorders to have the freedom to makechoices and seize opportunities

The Haemophilia Society

The Haemophilia Society was established in 1950 and is the onlynational patient organisation in the UK for people with haemophilia, vonWillebrand’s and related or associated bleeding disorders. Our vision is:

Freedom to make choices and seize opportunities for peopleaffected by bleeding disorders

Our services include:

A telephone and email helpline

Dedicated website with up to date information, downloads anddiscussion forums

Publications, short films, booklets and other resources for affectedpeople, their families and carers and for healthcare professionals

Events & holidays

Outreach and local support groups throughout the UK

Small grants through the Tanner Fund

Advocacy and campaigning

Specialist Information for:

Inhibitors

Women affected by bleeding disorders

Children, young people and families

Older people with bleeding disorders and those affected by mobilityor pain issues, or blood-borne viruses

All the quotes contained in this booklet come directly from peopleaffected by bleeding disorders. Pictures used with permission.

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An Introduction to Bleeding Disorders

This is a general introductory booklet for all bleeding disorders, includinghaemophilia, von Willebrand’s disease and rarer factor and plateletdisorders. It should be helpful for people directly affected by bleedingdisorders and for those around them.

The outlook is now the best it has ever been for people with bleedingdisorders. Medical science has made huge advances. There are still nocures, but with modern treatment, children born now can look forward toa normal life expectancy, taking advantage of education, training, sport,employment and travel opportunities.

For more detailed information on particular disorders please see theother two booklets in the series: An Introduction to Haemophilia and AnIntroduction to Rare Bleeding & Platelet Disorders.

‘We believe the most important thing for us isto have complete answers to our questions’

What are bleeding disorders?

Bleeding disorders are conditions, usually inherited, where the blood failsto clot properly. These conditions are rare in the general population andaround 24,000 people in the UK are diagnosed with one.

This booklet will cover the main issues around living with a bleedingdisorder. The disorders featured include:

Haemophilia A & BVon Willebrand’s DiseaseFactor deficiencies I, II, V, VII, X, XI, XIIIPlatelet disorders

This booklet is a brief introduction. If you would like more in-depthinformation on any of the issues mentioned here, please do see one ofour other publications, look on our website, or get in touch with us byphone or email.

Tel: 0800 018 6068 www.haemophilia.org.uk

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What types of bleeding disorder are there?

HaemophiliaHaemophilia A is probably the most well-known bleeding disorder,affecting one in 5,000 males. Haemophilia A is due to a deficiency ofclotting factor VIII (factor 8). Haemophilia B is caused by a deficiency inclotting factor IX (factor 9) and affects one in 30,000 males.

Haemophilia A and B are classified as mild, moderate or severedepending on the level of clotting factor in the blood. For example,someone with less than 1% of clotting factor in their blood is classifiedas having severe haemophilia.

‘At the moment there is no cure, so I just haveto get on with things and understand that that’s

just the way it is’Von Willebrand’s DiseaseVon Willebrand’s disease (VWD) is the most common bleeding disorderand is usually inherited. Von Willebrand factor (VWF) is one of theproteins in the blood that works to make blood clot. In VWD either thereis a shortage of VWF or there is something wrong with its structure sothat it doesn't work properly. Because of these problems, it takes longerfor the blood to clot and for bleeding to stop.

Von Willebrand’s disease is divided into ‘types’ and it is important toknow the type as this affects the treatment you receive:

Type 1 is the mildest and most common form of VWD. Someone withtype 1 has low levels of VW factor but the VW factor that is present doesfunction normally. Three in every four people with VWD have type 1.Type 2 – the VW factor produced does not work well. Type 2 is dividedinto four subtypes: 2A, 2B, 2M and 2N- Type 2A is the most common. VW factor is present but does not- work properly.- Type 2B may also have a low platelet count (thrombocytopenia)- Type 2M can cause bleeding episodes. It can be difficult to- diagnose and is very like type 1 VWD.- Type 2N causes reduced levels of factor VIII because the VW

factor cannot bind factor VIII properly.

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Type 3 is classified as severe and is the rarest form of the condition.Someone with type 3 usually lacks von Willebrand’s factor altogetherand has low amounts of clotting factor VIII.

For more information on VWD see our booklet A Guide for WomenLiving with von Willebrand’s or our website section on the topic.

Other bleeding disorders and rarer factor deficiencies

There are several clotting factors in the blood which help to stabilizeclots and stop bleeding. In haemophilia A factor VIII (8) is missing or lowand in haemophilia B factor IX (9) is missing or low. It is also possible tohave a lack of other clotting factors. The factors are alwayswritten using Roman numerals.

Factor I (1) deficiency, also called Fibrinogen DeficiencyFactor II (2) deficiency, also called Prothrombin DeficiencyFactor V (5) deficiencyFactor VII (7) deficiencyFactor X (10) deficiencyFactor XI (11) deficiencyFactor XII (12) deficiency (lack of Factor XII does not cause bleeding)Factor XIII (13) deficiency

Other factor deficiencies differ in the kind of bleeding symptoms theycause and in their severity, depending on the person.

Platelet disordersA platelet is the smallest type of cell that helps the blood clot . Plateletdisorders occur either when the number of platelets is low or when theplatelets don’t function correctly because of their size or shape. Theyinclude:

Thrombocytopenia or having a low platelet count.Bernard-Soulier SyndromeGlanzmann’s thrombastheniaAlpha Granule Deficiency/ Gray Platelet SyndromeDense Granule Deficiency/ Storage Pool Deficiency

For more information see An introduction to rare bleeding and plateletdisorders.

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How do you get bleeding disorders?

Most bleeding disorders are inherited, meaning they run in families.Rarely, it’s possible to develop or acquire a bleeding disorder, oftenbecause of another illness or condition.

Haemophilia is a geneticcondition that is usuallyinherited. It is carried onthe X chromosome whichmeans that women arecarriers and men havehaemophilia. There isusually a history ofhaemophilia in the family,but one in three childrenwith haemophilia is borninto a family with nohistory of the condition. Itis an x-linked recessivecondition which isshown in the diagram onthe right.

Von Willebrand’s Disease is usually inherited. The affected gene is onone of the regular non sex-linked chromosomes, unlike haemophilia. Ittherefore affects both males and females in equal numbers.

In what is called the classical inheritance pattern, the von Willebrand’sgene is usually dominant. This means that a parent who has VWD has aone in two (50%) chance of passing a VWD gene on to each of her or hischildren. Types 1 and 2 are usually inherited this way. In the lesscommon inheritance pattern, two parents, each with VWD but withoutsymptoms may together have children who are severely affected byVWD. This form is called recessive. Type 3 VWD is usually inherited inthis recessive pattern.

Other bleeding disorders are usually carried on differentchromosomes, so they aren’t sex-linked and affect men and womenequally. More research is needed into the way rarer disorders areinherited as this is not yet entirely clear for every condition.

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What are the symptoms?

People have different bleeding symptoms, depending on theindividual and also the type and severity of the disorder. The followingare commonly seen in people with bleeding disorders, though noteveryone will experience all of them.

· Nose bleeds (epistaxis) – common in many disorders andespecially in young children. Keeping the nose moist with creamsor sprays can sometimes help prevent bleeding and in extremecases cauterization of the nose may be performed.

· Easy bruising – young children with bleeding disorders oftenbruise easily and in places where other children normallywouldn’t. Many adults also bruise easily.

· Mouth bleeds – both nose and mouth can bleed a lot and it canlook very frightening, especially if blood is soaked into bedclothes.Sucking on ice or ice lollies can help.

· Heavy periods – many women who are affected by or who arecarriers of bleeding disorders have heavy periods (menorrhagia)and may also have painful periods (dysmenorrhoea).

· Bleeding after injury, surgery, or after giving birth - this willusually be managed with factor replacement.

· Joint & muscle bleeds - these are commonly seen with severehaemophilia and cause pain and swelling in the joints or deepbruising in soft tissues. They are less common with rarer bleedingdisorders and rare with platelet disorders.

· Miscarriage - some factor deficiencies may cause a higher thanaverage chance of miscarriage which can often be managed.

· Blood in urine or other bodily fluids.· Bleeding from umbilical cord or stump in new-borns (with

severe cases only).· Central nervous system (CNS) bleeds – such as in the brain or

spine, these are very serious and may occur with some disorderslike Factor VII deficiency, in very severe cases.

· Small pinprick bruises, or purpurae, on the skin often occur withplatelet disorders.

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How will I be diagnosed?

Children with severe bleeding disorders are usually diagnosed within thefirst year of life when they start to crawl, often because they are seen tobruise easily. Some children may be diagnosed because of abnormalbleeding after an injury or surgery; for example, prolonged bleeding aftercircumcision. Moderate and mild bleeding disorders may not bediagnosed until later in childhood, or even into adulthood. The conditionmay not cause any symptoms until the person has surgery, a toothextraction or an injury.

Bleeding disorders are usually diagnosed through personal and familyhistories and blood tests. In the case of von Willebrand’s disease theblood tests may need to be repeated as the levels of clotting factors canvary over time and can be affected by a range of conditions such asstress, surgery, pregnancy, and exercise.

‘When we got a diagnosis, we were almostrelieved because we finally had a name for it’

What do my blood tests mean?Please note: The following is provided as a rough guide only. TheHaemophilia Society cannot offer medical advice or interpret individualtest results.

Bleeding Time (BT): Measure the time taken for a small cut to stopbleeding. The normal range is between 1 and 9 minutes but may varyslightly with the method used in a particular lab.

PT (prothrombin time): A blood sample is taken to measure the timetaken for the plasma in blood to clot. The normal range is usuallybetween 11 and 13.5 seconds. Anything above this time may indicate ableeding disorder.

PTR (prothrombin time ratio): the ratio of your clotting time to that ofthe standard clotting time for that particular laboratory.

PTT/aPPT (activated partial prothrombin time): similar to the PT,measures the time taken for a sample of blood to clot. The normal rangevaries quite a lot between different hospitals due to differentcombinations of machines and chemicals used.

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Platelet count: measures how many platelets you have in your blood. Anormal range is usually 50x109/l. Many platelet disorders don’t affect thenumber of platelets, but rather their shape, size, or function.

Fibrinogen (also known as factor I): measures the amount of fibrinogenprotein in your blood. Normal range is 200-400 g/L.

Platelet aggregation test: measures the time it takes for your plateletsto ‘clump’ and form a clot. The normal range depends on the lab; pleaseask your doctor. Substances such as ristocetin or collagen are used tostimulate the aggregation or ‘clumping’.

Factor assays: Measures your levels of a particular factor. For example,normal level for factor VIII is 50% or over. Less than 1% usually indicatessevere haemophilia A. Please note that for rarer factor deficiencies thelink between bleeding and level of factor is not always that clear, i.e.someone with higher factor levels may actually bleed more thansomeone with lower levels. We are not yet sure exactly why this is,however, people with less than 1% of any factor tend to have bleedingsymptoms which can be severe (with the exception of Factor XIdeficiency).

Please ask your doctor if you are unsure about your results. Please alsonote that ‘normal ranges’ vary for each lab according to methods usedand your age, gender, state of health and other factors.

Bruising in Children

Many children with bleeding disorders bruise easily, especially when theyare learning to walk. Unfortunately this has sometimes led toinvestigations into the possibility of non-accidental injury or child abuse.It is difficult to give guidelines on what kind of bruising should beexpected, but it is now becoming routine that children who are showingsigns of bruises are referred for blood tests to see if a bleeding disordermay be the underlying cause.

The Haemophilia Society advises being aware of the fact that childrenwith bleeding disorders often bruise easily or suffer from mouth bleeds inways which are different from other children. However, knowing that achild has a bleeding disorder should not get in the way of any childprotection concerns you may have. For further information please seeour child protection policy and procedures.

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How will I be treated?

A number of different treatments are available for bleeding symptomsand the ones which are used will depend on the individual and theirparticular condition. With some exceptions mentioned below, treatmentsare given intravenously (also called an infusion), usually into the arm orback of the hand.Desmopressin (DDAVP) is a synthetic hormone given in a nose sprayor by infusion. Not everyone responds well to it. Possible side effectsinclude facial flushing and water retention.

Tranexamic acid helps to stabilise the clot and is used to treat minorbleeding episodes. It is often administered in tablet form but can begiven in syrup form or intravenously.

Fibrin glue can sometimes be applied straight to a wound to help a clotstabilise.(below) Carrying out a intravenous infusion into the hand

Clotting factor concentrates areused to treat deficiencies of aparticular factor. Not all the factorsare available as single concentrates.

Recombinant clotting factorconcentrates: some clotting factorsare now made through geneticengineering and don't contain anyhuman proteins, making themextremely safe.

Fresh Frozen Plasma (FFP):plasma is the yellow-coloured part ofblood that contains platelets andclotting factors. If there is no factorreplacement available for yourparticular deficiency you may begiven FFP from donated humanblood.

Platelet transfusion: for more serious bleeding in platelet disorders atransfusion of platelets may be needed.

Contraceptive pills, coils, or implants can be very helpful in treatingheavy periods. Treatment is either given ‘on demand’ (when it’s needed)or as ‘prophylaxis’ (given regularly to try to prevent bleeding).

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Where do I go for treatment?

Treatment and care of people with bleeding disorders is veryspecialised and is usually carried out in haemophilia centres within NHShospitals. There are a large number of haemophilia treatment centres inthe UK.

Comprehensive care centres (CCCs) offer a complete range oftreatment and diagnostic services, including genetic counselling anddiagnosis. There is a CCC in most big cities in theUK.

Haemophilia centres provide routine care,information and support. Generally speaking, thesetend to be smaller centres

(Right) Examples of medic alert tags

Emergency treatmentSome centres have arrangements for emergencycover but remember that in an emergency you maybe brought to A& E and treated by staff who aren’t familiar with bleedingdisorders. As a precaution, anyone with a bleeding disorder shouldalways carry information about their condition and prescribed treatment.Their treatment centre will supply a green card which lists details of thebleeding disorder and treatment. A medic alert tag with similar detailscan also be worn.

Treatment while travellingHoliday and travel plans should be discussed in advance with yourtreatment centre, particularly if a supply of treatment is needed whentravelling. It’s really important to arrange travel insurance that will coveryour bleeding disorder, (as well as a valid European Health InsuranceCard, EHIC, when travelling in Europe) and you may want to find outwhat treatment centres there are in that country before you go.

Home treatmentFactor concentrates can be stored at home which allows most peoplewith severe haemophilia, von Willebrand’s disease and other bleedingdisorders to treat themselves at home. Most haemophilia centres nowsupply the equipment and arrange delivery of concentrate directly topeople at home. Treatment centre staff will have information about thisservice.

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Where can I go for genetic testing or counselling?If you are worried about having children when you know there is ableeding disorder in the family, it’s a good idea to talk to a geneticcounsellor. GPs can organise a referral to a haemophilia centre,otherwise some centres will accept a self-referral. Your GP can alsoarrange an appointment for you at a regional genetic service.

Full genetic testing includes DNA tests to show whether someone is acarrier of the condition. The aim of genetic counselling is to give youenough information about the risks of inheritance, so you can make yourown decisions.

‘We were prepared for the chance of our babyhaving haemophilia but as it was a 50/50

chance we were being optimistic… However theliterature which the Society has provided has

been so helpful’What options are there for starting a family?When people know that a genetic disorder exists in the family, they maywant to know about the range of options open to them for havingchildren. New medical technologies now offer a variety of screening andtesting possibilities although these can lead to difficult choices, includingthe option of terminating the pregnancy. These are very personal andsensitive decisions and some people may prefer to go ahead and try fora baby knowing that there is a chance it will be a child with a bleedingdisorder. Others may want to avoid having a child with a bleedingdisorder.

Ultrasound or maternal blood test can tell you about the gender of thefoetus – this can be useful for ruling out certain disorders in conditionswhich only affect one sex such as haemophilia A and B.

PGD (pre-implantation genetic diagnosis) – a technique similar to IVF,which involves screening an embryo for certain genes.

CVS (chorionic villus sampling) – taking a sample from the placentaduring pregnancy to test for the affected gene.

Amniocentesis – taking a sample from the amniotic fluid to test for theaffected gene. This is done later in the pregnancy than CVS.

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When is the best time for genetic testing?There is no ‘right’ time and no legal age limit for being tested. Theprocess of genetic testing can take longer if the gene mutation in afamily is not known.

By law, people should be able to give informed consent before beingtested for carrier status. However, with haemophilia it may be necessaryto test a girl’s factor level in childhood or before surgery (this can bedone by taking a blood sample). It’s important to remember that carriersof haemophilia can have factor levels as low as people with mildhaemophilia. Equally, many carriers have normal factor levels. Testingfactor levels won’t tell you if someone is a carrier or not.

Preparing for birthDuring pregnancy and birth, special arrangements need to be made ifthere is a possibility that the baby has a bleeding disorder. Theobstetrician, midwife and haemophilia team should work with theparents during the pregnancy to develop a delivery plan that ensuresthe safety of both the mother and her baby.

Some delivery methods should also be avoided, including forceps,vacuum extraction, and the use of foetal scalp electrodes. If you arepregnant or considering starting a family and you are affected bybleeding disorders either as a carrier or having one yourself, it’srecommended that you consult your centre for an individual plan. Somecentres now have links with obstetricians and gynaecologists.

Women with bleeding disorders shouldn’t have an epidural unless theirbleeding disorder can be treated. Excessive bleeding after giving birth orhaving a Caesarean section is a major risk factor for women withbleeding disorders. This can be prevented and controlled with treatmentif it’s known about in advance.

For more on this please see the UKHCDO Guidelines onThe obstetric and gynaecological management of women with inheritedbleeding disorders.

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Free foetal DNA - a non-invasive technique now in development whichmay be able to test foetal DNA through a sample of the mother’s blood.It is currently only possible to test for the gender of the foetus.

Amniocentesis and CVS both carry a risk of miscarriage and all of thesetests may involve some difficult decisions and emotions.

What are the possible complications of bleedingdisorders?Although the outlook is now very positive for people with bleedingdisorders, they are still lifelong conditions and there are some possiblecomplications to be aware of.

PainHaving a bleed, especially in a joint or muscle, can be painful. Aside frompainkillers there are a number of other strategies to reduce the pain youfeel - please contact the Haemophilia Society for more detailedinformation.

MobilityRepeated joint bleeds over a long time can cause damage to the area.This pain and joint damage can eventually have a serious impact onsomeone’s ability to get around. The correct use of treatment byprophylaxis, along with sensible levels of exercise and access tophysiotherapy, can help prevent the joint damage that was common inthe past for people with severe bleeding disorders. Many youngerpeople are now free of joint damage.

InhibitorsIt’s possible to develop an inhibitor to treatment, which means that yourbody starts to reject the treatment and it doesn’t work properly. Inhibitorsare most common with haemophilia A and a number of differenttreatments are now used to try to overcome them.

To avoid these complications, it’s really important to follow yourhaemophilia centre’s advice and keep taking any treatment in the waythat they tell you. You can also pay attention to:

The PRICE regime of protection, rest, ice, compression and elevation isa good first-aid method for treating bleeds and swelling.

Physiotherapy: access to specialist physiotherapy can be invaluable inhelping to prevent damage after bleeds. For example a physiotherapistmay be able to correct damaging changes to gait and weight-bearing.

Exercise: exercise and staying at a healthy weight are stronglyrecommended for helping to strengthen the joints and muscles if theseareas are prone to bleeding.

Dental care: Looking after your teeth is really important for people withbleeding disorders, as dental work can cause bleeding problems.

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‘An inhibitor is when your body does not likethe factor medicine any more so it fights it and

then the factor doesn't work ’

What about treatment safety?

Many people with bleeding disorders around the world are treated withclotting factor concentrates made from donated human plasma. In theUK where fewer people are treated this way, there is a range of plasma-derived products available.

You may have heard that in the past some people who were treated withproducts made from human plasma tragically became infected with HIVand/or hepatitis C (blood-borne viruses). Since 1985 (1987 in Scotland)these products have been treated with a wide range of safetyprocedures to reduce the possibility of passing on viruses.

As a precaution, it’s recommended that people with a bleeding disorderand no evidence of previous infection should be vaccinated againsthepatitis A and B. Your haemophilia centre can advise on this.

Before 2001 there was also a risk that vCJD from blood donors couldhave been present in plasma that was used to treat people. To date no-one has been known to develop vCJD from plasma so the risk is stilltheoretical. If you were treated with plasma or non-recombinant factorbetween 1980 and 2001, you will have been informed of this and your ‘atrisk’ status. At present this means you are at just a 1% higher risk thananyone else in the UK who ate beef before this time.

Since 1998 everyone in the UK is entitled to receive recombinant clottingfactors, if one is available for their condition. Recombinant factors aregenetically engineered and do not contain human blood products. Somepatients are still being treated with plasma however, either because theychoose to continue with this treatment, because a recombinant has notyet been developed for their condition, or because they have an inhibitor(where their usual treatment stops working).

If you are worried about treatment safety please get in touch for furtherinformation.

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What’s it like living with a bleeding disorder?

Living with a bleeding disorder affects someone’s whole life and that oftheir family. Thanks to modern treatments, it is now possible to live a fulland active life. However, some adults are still coping with complicationssuch as joint damage, hepatitis C and HIV. At present there is no curefor bleeding disorders – but they can be managed effectively.

For familiesIn some families where a young person has a long-term condition, it canbe difficult to ‘let them go’ and allow them to be independent. Parentsmay still be very involved with their child even after they’ve grown up.

Many parents and carers learn to treat their child at home, includingdoing intravenous infusions. At first it can seem like a huge step to injectyour child, but after a while most families are able to do this, which helpscut down on hospital visits and limits the disruption to family life.

Because bleeding disorders affect the whole family, The HaemophiliaSociety also supports the siblings and children of people with bleedingdisorders. They also need information, support and time for themselves.

‘We want the children to have as normal a lifeas possible and are determined not to wrap

them in cotton wool’For schoolsChildren with bleeding disorders will have the same needs as other kids,except they may at times need special arrangements. For example, theschool may need to provide an area which is suitable for parents to givetreatment or for a young person to self-treat. Some children have theirown classroom support assistants.

Equally they may not need any special attention at school, except forstaff to be aware of their condition and keep an eye on them. Childrencan do many sports and other activities, although rugby and some othercontact sports are not advised. The haemophilia centre can advise whenit comes to sports and activities. Being seen as ‘different’ or ‘special’ canbe very damaging, so it’s really important that the school treats affectedpupils as normally as possible, including allowing them to go on schooltrips where possible.

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For workplacesThe only career which is definitely closed to people with bleedingdisorders is the armed forces. Apart from this, people do a range ofjobs. If you are thinking about working overseas you may be able tomake arrangements to have your treatment there.

We are often asked about declaring medical conditions on applicationforms. It is a personal choice for anyone to decide what information theygive in a job application form. However, if a health condition is askedabout, but not declared, then the applicant will lose some legal protectionif the condition comes to light at a later date.

‘I'm thinking of going to America, but my mainconcern is how my condition can be treated

while I'm out of the country’

The Employment Section of the Disability Discrimination Act (DDA) putsa duty on employers to treat people with a disability or medical conditionin the same way as other colleagues. This means that an employer can’tdiscriminate against an employee because of his or her disability withoutjustification. The Haemophilia Society can provide information andsupport to people if they feel they are being discriminated against orhave any work-related queries.

Finally ...One way to cope with the medical and social issues of having ableeding disorder is to learn as much as possible about the conditionand understand the impact it has. Many people have been able to findmedical professionals that they feel comfortable with and who listen totheir concerns and needs. People who work with their haemophiliacentre and get involved often find it gives them a greater sense ofcontrol and choice in managing their life.

Why not Get Involved?The Haemophilia Society wants people to get involved and empoweredin their own treatment and care. We can provide support and training ifyou would like to volunteer, campaign, be a representative, or just learnmore about your condition.

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What’s next for bleeding disorders?

There are many reasons to be optimistic about the future for people withbleeding disorders. For people with haemophilia, genetically engineeredrecombinant factor VIII and IX are now the first line of treatment andcarry no known risks of viruses. Prophylaxis (regular treatment toprevent bleeds) is used increasingly and has had a huge impact inpreventing joint damage. Because of this, the prospects for youngpeople with haemophilia are excellent.

For people who receive plasma-derived treatments, improvements tosafety are continually reviewed and developed. Donors are carefullyscreened and blood products are treated with a range of methodsdesigned to get rid of viruses that may be present. Blood and bloodproducts can now be said to be safer than ever. There is also thepossibility of recombinant factors for other conditions.

The next realistic and big advance will be longer-acting factor with thepossibility of fewer injections for prophylaxis and treatment of bleeds.Research is also ongoing into producing a recombinant treatment forvon Willebrand’s disease.

Finally, advances in genetic science mean that the use of gene therapyto treat bleeding disorders is a real possibility and good progress hasbeen made in studies in this area. The research into haemophilia A & Bis still at an early stage, but gene therapy is a very encouraging prospectfor the future.

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Resources

The Haemophilia Society produces a range of resources including DVDs,publications, and online information. For an up-to-date list as well asdownloads, films and more, please go to our website atwww.haemophilia.org.uk.

Our other websites:www.womenbleedtoo.org.ukwww.inhibitorsupportgroup.orgwww.youngbloods.org.uk

There are also several useful external websites:www.wfh.org – the website of the World Federation of Hemophiliaoffers a searchable database of treatment centres worldwide.www.hemophilia.ca -the Canadian Hemophilia Society’s website has arange of useful downloads.www.ukhcdo.org – the website of the UK Haemophilia Centre Doctors’Organisation, where you can find patient information, servicespecifications, and lists of UK haemophilia centres.www.travelfactor.co.uk – website run by Baxter healthcare whichoffers factsheets in different languages.www.factorfitness.co.uk - website run by Bayer focussing on sportand physiotherapy.www.medicalert.org.uk - a registered charity offering a range of medicalert jewellery.www.bpl.co.uk - the UK Blood Products Laboratory produce a range ofuseful booklets, including some on rarer disorders.

Other pharmaceutical companies also produce useful patient bookletsand information—look on their websites for support.Haemophilia Society Publications:

An Introduction to haemophilia (2008)An Introduction to rare bleeding & platelet disorders (2008) AGuide for Women Living with von Willebrand’s (2007)

Regular magazines and newsletters including HQ, Female Factors,Young Bloods, and the Inhibitors magazine.

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The Haemophilia Society would like to thank BaxterHealthcare for providing the funding for thisindependent information booklet.

We would also like to thank the people affected bybleeding disorders and the healthcare professionalswho contributed and commented on the text, including:Debra Pollard, Dr Paul Giangrande, Richard Oakley,Robert James, Eileen Ross, Dr Mike Richards,Ian D’Young, Georgina Robinson, Colette Romdhani

Our thanks also go to the World Federation ofHemophilia who kindly gave permission for thereproduction of their images.

The Haemophilia Society 2012 (reprint)

0800 018 6068www.haemophilia.org.ukinfo@haemophilia.org.uk